Frequently Asked Questions and Terminology
What is Pediatric Palliative Care?
Pediatric palliative care is the care of patients whose disease is not responsive to curative treatment, where pain control and control of other symptoms is paramount. Pediatric Palliative care aims to enhance the quality of life of children and young people with life-limiting conditions. In addition to managing pain and symptoms, its focus is also on offering emotional and spiritual support, providing respite care and supporting the family through bereavement.
What is Respite Care?
Respite is short term care when necessary to relieve the child’s family or other persons caring for the patient. Families often provide extraordinary, around the clock, continuous care to their child for days, weeks and years without any “time off” or a “full-nights rest.” A skilled facility will give families a chance to physically and emotionally recharge so that they can continue to provide the high level of care their child needs.
What are Life-threatening or Life-limiting Conditions?
Life-threatening and life-limiting conditions are often used interchangeably. They most often refer to a diagnosis or condition that is not responsive to curative treatment and often mean that a child has a shortened life-expectancy. Some conditions may include various malignancies/cancers, rare genetic or chromosomal disorders, heart/lung conditions, rare neurological conditions and complex chronic conditions such as:
- Cystic Fibrosis is a recessive genetic disease that affects the entire body, causing progressive disability. Difficulty breathing is the most serious symptom resulting from frequent lung infections.
- Duchenne Muscular Dystrophy is a hereditary disease that weakens the muscles that move the body that more commonly affects males.
- Neurodegenerative Conditions affect children in varying degrees but lead to an unfortunate progressive decline and loss of previously gained milestones. This usually progresses to intractable epilepsy (seizures) and loss of interaction with the outside world.
- Rett Syndrome is a neurological disorder of the grey matter of the brain which affects head growth, loss of hand use, stagnation and regression of previously acquired skills. Affects females more commonly and are prone to gastrointestinal disorders and seizures.
- Spinal Muscular Atrophy is a neuromuscular disease that results in progressive muscular atrophy (wasting away) and weakness. Requires comprehensive medical care and therapies.
What is Crescent Cove?
Crescent Cove is a non-profit, 501(c)(3) organization with a mission to offer care and support to children and young adults with a shortened life expectancy, and their families. Crescent Cove is dedicated to building and operating a children’s respite and hospice care home in the Twin Cities. This home will be specifically built for children and young adults who have a shortened life expectancy due to a condition that is life-limiting or life-threatening from ages 0-21 years old and their families.
In addition to working to fund and build a residential children’s hospice, Crescent Cove has two other strategic priorities – family services, and advocacy. We are currently providing funds to families to access integrative therapies and we are also advocating to raise awareness of the need for more support for the families we serve.
Once the home is built, what services will be available?
Our vision is to offer an optimal caring and healing environment with skilled professionals providing palliative and end-of-life care to children, including pain and symptom management, massage and hydrotherapy, play, music, pet and art therapies. Crescent Cove will not replace the child’s primary care team, but will collaborate with those professionals. We will be dedicated to not only caring for children and young people, but will also provide a foundation of support and appropriate services to their families. This will include on-site accommodations so that the family may remain close, and still receive physical and emotional respite. This nurturing home environment will have open gathering spaces for children and families to spend rejuvenating time together as well as revered space for end-of-life care.
At what stage is the organization?
Crescent Cove is in the midst of building awareness and support in our community, which is directed by its Board of Directors, staff, advisory councils and many volunteers. Dozens of volunteers support the organization’s efforts towards building the home. The organization’s staff includes our Founder Katie Lindenfelser who serves in a part-time role, and our office manager Karla Vaughan.
Crescent Cove became a Minnesota non-profit corporation first as the name Children’s Lighthouse of Minnesota on September 30, 2009 and received 501(c)(3) status from the IRS in June 2010 (retroactive to the 9/30/09 date). Crescent Cove is continuing to build relationships in the community and is working on fundraising in order to build this much needed home. In 2013 we conducted interviews with community leaders soliciting advice for successful campaign strategies. A number of key relationships with potential major donors are being forged.
Concurrent with our efforts to raise funds for building the facility, we are providing financial support and resources to families in need of short-term respite care. We are also providing resources to help families receive integrative therapy sessions at their home.
Members of our Building Committee are working with legal counsel to find a suitable building site for Crescent Cove. Thank you to Mortenson Construction for supporting our organization on a pro-bono basis to assess the best site option for our home and operations and connect us with RSP Architects for the design.
Is Crescent Cove a public charity?
Yes. Crescent Cove is a Minnesota non-profit corporation recognized by the IRS as a 501(c)(3) public charity. 100% of donations are used for the development of the infrastructure, programs and services of Crescent Cove. Donations are tax deductible to the extent permitted by law, please consult your tax advisor with questions about tax deductions to public charities.
Why is it called Crescent Cove?
Our vision is that the hospice home will serve as a place of respite for children and families in our community.
- The crescent moon represents night and rest, while the crescent moon is in a phase of transition; a metaphor for life.
- The moon itself is always present in one form or another; it revolves around us, as our team will always be there for families.
- The crescent shape represents an embrace.
- A cove represents a place to find shelter or respite during difficult times.
We chose the colors of our logo because of what each color represents:
Blue and Turquoise represent peace, tranquility, calm, stability, harmony, unity, trust, truth, confidence, conservatism, security, cleanliness, loyalty, sky and water.
How is Crescent Cove different from Ronald McDonald House?
Crescent Cove and Ronald McDonald House (RMH) are two independent, non-profit organizations that are governed by two separate Boards of Directors. Both organizations provide unique environments and services for children and their families, which make it important to distinguish the differences between the two organizations.
Crescent Cove’s vision is to provide a home and care services to children with life-limiting illnesses and their families. Our goal is to open a freestanding, independent home-like facility with 8 bedrooms so that children with life-limiting conditions can receive respite and end-of-life care outside of the hospital or home environment. The home will be licensed by the State of Minnesota as a residential hospice facility. Families will be welcomed to stay at the home in family suites or may have the weekend away while their child receives compassionate care at Crescent Cove. This allows families the opportunity to concentrate on being parents, siblings, grandparents, etc. while the Crescent Cove staff attends to the daily needs of the child with a life-limiting condition. There will also be additional support services available to the family, including social and spiritual support and grief counseling.
Ronald McDonald House
RMH offers families a place to stay that is near the hospital where their child is receiving treatment. RMH provides a home-away-from-home for families who live farther distances from the medical facilities where their child receives treatment. It is a home available to family members who have a child actively receiving treatment in the hospital. Children may not stay at RMH without their parents and the house is not licensed to provide any medical care or intervention.
Crescent Cove and RMH have distinct missions and visions for serving children with life-limiting conditions and their families. While there will hopefully be opportunities for the two organizations to work together by sharing referrals and support for children and families, it is important that the unique differences of these organizations are recognized, as well as the need for both of these services in our community.
How does the hospice/respite home you envision compare to a hospital hospice?
Not all hospitals have palliative care/hospice rooms available for patients and families. Palliative care rooms typically have more space and amenities for family members who wish to be near their child, whereas typical hospital rooms are usually tighter on space. Even though hospitals often have a larger room to accommodate a child who is dying and his/her family, they are typically near other hospital rooms where children are receiving care and treatment. Hospitals are necessary for urgent, acute care and treatments, but not always ideal or necessary for respite or end-of-life care unless the child is in need of, or desiring hospital-level, acute care and/or treatments.
Crescent Cove will be a home for children with life-limiting conditions to stay to have a short break (respite) or as a comforting and sacred place at the end-of-life, with space for the family to stay as desired and for their family to be supported as well. Daily cares that would otherwise be provided at the child’s home will be provided at Crescent Cove, as we will offer a home-like environment that differs from the hospital environment.
How do you plan to work with the hospitals? Will they have a stake in this?
Clinicians and clinical teams at Gillette Children’s Specialty Center, University of Minnesota – Masonic Children’s Hospital, Children’s Hospitals and Clinics of Minnesota, Pediatric Home Service and Bayada Pediatrics all agree that there is a great need for this pediatric hospice and respite care home. It is our goal to work collaboratively with all of them.
We have been meeting together with professionals from the pediatric palliative care departments to determine the best care that can be provided at this free-standing, community-based children’s hospice and respite care home. As part of our governance structure, we have a Clinical Advisory Council that represents an interdisciplinary team of professionals from various pediatric healthcare organizations in the Twin Cities. One of the pediatric palliative care physicians is on the Board of Directors for Crescent Cove.
At this time, the hospitals have not contributed financially, but it is our hope and plan that over time, each hospital may be able and willing to contribute a portion of the operational costs, as this home will serve children cared for by each organization.
What will be the criteria for children/families to stay at Crescent Cove?
The home will be available for respite stays and end-of-life care for children diagnosed with a condition that is considered to be life-limiting meaning the child has a shortened life expectancy and will most likely not live to adulthood. Specific admission and enrollment criteria as well as the referral process are being determined and defined by the Clinical Advisory Committee. We anticipate that depending on the child’s condition, the child and family may be welcome to stay for 10-15 nights of respite per year and may utilize that time in various increments. There will be no limit to the length of stay for children who are being cared for while they are actively dying through death, and their families.
How does reimbursement work? What will the operational model look like?
Currently, there is no reimbursement available for respite stays through Medicaid or private insurance providers. Crescent Cove has a Reimbursement Task Force that is committed to understanding what will need to be in place in order to access reimbursement in the future. Because this home and the model for this home has not existed in our state, there are many details to be understood – including the most appropriate state license for the home – so that children can stay for both respite and, as needed, at the end-of-life. In order for this model of care to be sustainable in the future, it will be essential to access reimbursement through Medicaid or private healthcare insurance plans in the future. The Board hired an accounting firm, Wipfli to verify this information as well as to review the existing models in the United States.
Crescent Cove has learned from Ryan House in Arizona, George Mark Children’s Home in California and Dr. Bob’s Place in Maryland that as they navigate this discussion on an individual, case-by-case basis, they are slowly accessing some reimbursement for end-of-life care. Primarily, these homes, similar to those in the United Kingdom, Canada and Australia are funded by philanthropic funds.
Children do not access Medicare as adults do in order to receive respite or hospice support. Furthermore, adult hospice homes frequently operate on a fee for service. It is our goal to offer respite and end-of-life care to children and families at no cost. This is because we do not want to turn families away and know that many families who have a child with a life-limiting condition have often exhausted all of their financial resources and have tapped into their long-term savings to look after their child. This model differs from the adult residential hospice model.
How much money do you need?
Wipfli LLP accounting firm has reviewed and refined our operating budget projections and capital campaign goal. Our capital campaign goal is $10 million, which includes the building and two years of operational funds essential for sustainability. Our annual operating budget once the home is built is $2-3 million depending on a low or high census. We are working with Ridgeview Medical Center to determine areas where we can share costs to benefit both of our operational budgets. In order to be sustainable into the future, Crescent Cove is working to understand a reimbursement model from third party payers like Medicaid or health insurance plans to support the ongoing operations. Ultimately, philanthropic funds will be needed to primarily support the ongoing operations of the home for the first 3-5 years.
What is the Harmon Killebrew Hospice Home for Kids Fund?
During his retirement years, Harmon Killebrew was a spokesperson for the hospice movement and embraced the role it plays at one of the most critical times we face in life. Along with the Board of Crescent Cove, Harmon’s widow Nita Killebrew and close friends created a fund to help build our home. The Harmon Killebrew Hospice Home for Kids Fund is part of Crescent Cove, and donations received through the fund are written out to Crescent Cove and tracked as a gift to this Fund. Since 2012 we have hosted an annual Home Plate gala to raise awareness and funds to help build this home, and have also have an annual day at the Twins game. Members of the advisory council for the Harmon Killebrew Hospice Home for Kids Fund include: Jack and Jennifer Morris, Tony and Gordette Oliva, Paul and Destini Molitor, Anita Oliva, Clyde Doepner, Kevin Smith and Jim Hays.
How does what you propose differ from palliative care?
The care that will be provided at Crescent Cove is palliative care, providing comfort, and pain and symptom management as needed. Palliative care is the holistic approach to a person’s care that has a condition that may be life limiting, though they may also be receiving treatment and still working to maintain the best quality of life possible.
How soon do you think this can happen?
It is our goal to break ground once $7.5 million of the overall capital campaign goal of $10 million is raised. We intend to raise the money needed prior to building knowing that we will have ongoing fundraising needs once the home is built. Crescent Cove has over $700,000 in the bank towards our overall capital campaign goal.
Thank you to Mortenson Construction for working on a pro-bono basis to help Crescent Cove find suitable land on which to build and for introducing us to RSP Architects who conducted a through interview process of our families to create an experience design of “what matters most to those we serve”. The resulting target was: At Crescent Cove we want our families and staff to feel Embraced, Assured and Celebrated.